Frequently Asked Questions
Systemic Lupus Erythematosus
| Q. I recently was found to have a positive antinuclear antibody on my blood test. I was told that I had lupus based on this blood test, but I feel well otherwise. Do I really have lupus? |
| A. Systemic lupus erythematosus requires an additional history of symptoms in conjunction with a positive antinuclear antibody. Thus having a positive ANA blood test alone is not sufficient to make a diagnosis of lupus. Some normal individuals have a positive test. Certain medications may trigger a positive result as well. These medications include Dilantin, isoniazid (INH), procainamide and Hydralazine in addition to other medications. Also a positive ANA may be seen in association with autoimmune disease of the thyroid gland as well as certain types of liver disease. Patients with SLE will have diffuse joint pain, may have a facial rash brought out by sunlight, may have persistent ulcers in the nose, mouth, or vagina, may have significant hair loss, may have pleuritic chest pain, and may also have manifestations of central nervous system disease and/or kidney disease. There are other additional expressions of SLE as well. So, a test result in and of itself is not sufficient to diagnose SLE. |
| Q. I have had some hair come out occasionally with brushing or washing. Is this the type of hair loss that occurs in SLE? |
| A. . Female patients frequently complain of hair coming out with brushing and washing and thus this is a fairly common complaint. In lupus, hair comes out in more massive amounts and spontaneously on the pillow, so that when you wake up the pillow may be covered with hair. Patients may actually even have areas of baldness on the head. Thus, this is a much more severe form of hair loss that we are talking about in a lupus patient. |
| Q. I occasionally get canker sores in my mouth that last a week to ten days and then resolve. Should I be worried about this being a symptom of lupus? |
| A. Most ulcers that occur in the mouth or the nose or vaginal area in lupus persist for weeks to months on end. Canker sores are short-lived and resolve without this kind of history and are not to be confused with longer standing lupus mouth ulcers. |
| Q. I was told that lupus could affect my kidneys. Is this true? |
| A.In patients with more severe forms of lupus, the kidneys may certainly be involved. In a lesser percentage of patients, this can go on to cause significant kidney disease and even kidney failure. This is why it is important to be monitored with appropriate kidney tests to make sure that your kidneys are healthy. If you do have signs of kidney disease, then very frequently a rheumatologist will work together with a nephrologist (a specialist in kidney disease) to follow you closely to make sure that your disease is controlled. |
| Q. I was told that I could develop seizures or lupus of the brain or nervous system. Does this really happen? |
| A. Yes. In some patients with a more severe form of lupus, they can develop central nervous system involvement, which could include seizures as well as recurrent headaches including migraine type headaches. Patients can also develop involvement of the cranial nerves. When this occurs the rheumatologist will often consult with a neurologist (specialist in the central nervous system) to assist in the management of your condition. |
| Q. How can involvement of the kidneys and central nervous system be treated? |
| A. When patients have severe forms of lupus that involve the internal organs, such as the kidney and central nervous system, frequently they are treated with corticosteroid therapy during the acute phase. On a longer term basis patients may be treated nowadays with monthly intravenous doses of cyclophosphomide (Cytoxan) and then converted to oral Cytoxan after one year or more. Some patients have also been treated with intravenous gamma-globulin. |
| Q. Is lupus worse with sun exposure? |
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A. The amount of sun exposure that it takes to exacerbate a patient with lupus varies from patient to patient. If you live in a sunny area, such as Texas, use of a sun block is advisable at all times when exposed to the sun. Ultraviolet light, which is responsible for the photoactivation of lupus, can penetrate even the deepest clouds and will be present even on rainy or cloudy days. Therefore, sunscreen will be important even in these conditions. |
| Q. Is it advisable to become pregnant if I have lupus? |
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A. In general if your lupus is under good control, then you can have a successful pregnancy without a marked flare-up of your disease due to the pregnancy. If your lupus is very active, however, it might be better to get your disease under better control before trying to get pregnant. |
| Q. If I have a family member with systemic lupus erythematosus, does it increase the chance of me or another person in my family of getting SLE? |
| A. There is an increased incidence of lupus and/or other types of arthritis such as rheumatoid arthritis in family members of lupus patients. This certainly points towards a genetic predisposition to this disease. |
| Q. Can I exercise if I have lupus? |
| A. Yes, provided that you do not have severe inflammatory arthritis and that your disease is under good control. Exercise is recommended for patients with lupus. Specific exercise recommendations need to be discussed with your physician. |
| Q. Should I stop working if I have lupus? |
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A. No. Most patients with lupus will live productive lives. Certainly, jobs that require prolonged sun exposure or very heavy physical activity are not advisable for a lupus patient. Proper treatment of the lupus and an exercise program can increase endurance at work so that you may continue to be employed. |